This Presentation Is
Sponsored By
Atlantic Region
Nova Scotia Hospice Palliative Care Association Annual
Conference 2011
HOSPICE AND
PALLIATIVE CARE
Roots
Reality
Reaching Out
Dr Nigel Sykes
St Christopher's Hospice
London
“I want what is in your heart
and what is in your mind”
David Tasma
1911-1948
Inspirer of the
modern hospice and palliative
care
movement
Dame Cicely Saunders
1918-2005
Founder of the
modern hospice and palliative
care
movement
Where did Palliative Care come
from?
Hospice and Palliative Care began as a
healthcare reform initiative inspired by:
The perceived failure of existing cancer care
The particular failure of doctors to deal
adequately with dying patients
At heart it has therefore always been
medical in nature
But firmly centred on the patient experience
Initial planning of St
Christopher’s
The initial emphasis was on care :
“Patients must be able to see the life
of the world outside and yet not have
the light in their eyes or the draught
round their necks.”
A Three Part Vision
 St Christopher’s was legally registered in 1961
 Care was now joined by research and teaching:
 Provide care both in the Hospice and in patients’
homes
 Encourage the teaching and training of doctors and
nurses
 Promote research into the care and treatment of the
dying
 Construction commenced in March 1965
 St Christopher’s opened in July 1967
The Prospectus for St
Christopher’s
The Hospice “will try to fill the gap
that exists in both research and
teaching concerning the care of
patients dying of cancer and those
needing skilled relief in other longterm illnesses and their relatives.”
Saunders, 1967
How would the Vision be worked
out?
An in-patient unit
An out-patient clinic
Continuity of care for patients able to
go home, through a domiciliary service
Involvement of relatives in care
Bereavement care
Teaching in all aspects of care
Research into control of symptoms and
mental distress
Saunders, 1967
St Christopher’s Hospice
 850 patients and
families on any one
day
 Services free to users
 48 in-patient beds
 900 admissions each
year
 Serves a diverse
population of 1.5
million people
 15% non-malignancy
 Independent charity
 £15 million annual
budget
Hospice has Grown Up
It gave rise to Palliative Care
By 1975 (Balfour Mount, Montreal)
It became a “Movement”
By 1978 (Sandol Stoddard)
It spread:
Usually by inspiring dynamic individuals recreating Hospice in locally adapted versions
 A strength?
Not often by governments
 A weakness?
It can save money and lengthen life
(Temel et al., 2010)
Progress with the Vision
Care
 UK:
 217 hospices
» 160 voluntary (72%)
 3194 beds
» 2519 voluntary (80%)
 308 Home care teams
 345 Hospital support teams
 279 Day hospices
(Hospice Information, 2011)
 Palliative care exists in 115 countries
worldwide
(International Observatory on End of Life Care, 2006)
Progress with the vision
Teaching
Palliative care routinely taught in UK
medical schools
Specialty or sub-specialty training schemes
for palliative medicine in UK, Ireland, USA,
Australia, New Zealand
Nursing, medical and multiprofessional
degree and diploma courses
Major international conferences on five
continents
Progress with the vision
Research
Thirteen UK professorial chairs related to
palliative care and over 30 internationally
At least 12 peer-reviewed Englishlanguage journals primarily devoted to
palliative care research and development
Regular national and international
meetings dedicated to palliative care
research
In the United Kingdom
Hospice and Palliative Care have become
routine
Palliative Medicine has been a recognised specialty
for nearly 25 years
 With training schemes – just like any other specialty
Palliative Care has entered government policy
 The Cancer Plan 2000
 National Institute for Clinical Effectiveness Guidance 2004
 End of Life care Strategy 2008
Hospices have Care Quality Commission regulation
But was it meant to be like this?
Palliative Care remains an anomaly in the
UK health system
A specialist service provided mostly outside the
NHS:
 British hospices raise nearly $Can 1.5 million a day
from charitable sources to keep going
Fragmented, individualistic, unplanned
 In 1980 the Wilkes report said no more in-patient
hospices should be built (but most have been opened
since then)
Hospices devoting more effort to funding issues
than service delivery and performance?
Still largely cancer-orientated
Nearly 20 years after the SNMAC/SMAC report
Symptoms in cancer and noncancer conditions
Progress with the Vision?
16% of cancer deaths occur in hospices
23% of cancer deaths occur at home with
the involvement of a hospice team
50% of cancer deaths occur in hospital
7% of hospice patients have a non-cancer
condition
0.2% of non-cancer deaths occur in a
hospice
Deprived and minority ethnic groups
under-represented in hospices
Progress with the Vision in
Canada?
 No more than 30% of Canadians currently have
access to or receive hospice care
 In some areas the figure is 16%
 Variable funding arrangements according to
province, setting and health plan
 25% of the total cost of palliative care is borne personally
by families
 Only 6 out of 13 jurisdictions have nursing/personal care
24/7
 Almost 70% of deaths occur in hospital
 40% of terminally ill cancer patients visit the emergency
department within the last two weeks of life
 41% of long term care home residents have at least one
hospital admission in their last six months of life
(CHPCA, 2010)
Hospices – and Palliative
Care
Are hospices an intrinsic part of the
palliative care vision?
“We went out in order to go back in
again”
“There is need for diversity in this
field”
Historically, the vision was brought
to life through hospices
What is their place now?
A bit more vision…
“A few hospices will be needed for…
intractable problems, research and
teaching, …but most patients will
continue to die in hospitals, cancer
centres or their own homes; the
staff they will find there should be
learning how to meet their needs”
Saunders, 1978
Society is changing
Family splits and dispersal
Ethnic and cultural diversity
Ethnic minorities make up 8% of the UK
population but only 3% of hospice deaths
An ageing society
The number of over 65 year olds in Canada
has doubled in less than 30 years…
…and will double again in the next 25 years
The annual number of deaths in Canada will
increase by 33% by 2020
Society is changing
More chronic illness
80% of Canadians over 65 have a chronic
illness
Nearly 60% have two or more chronic illnesses
Increased personal aspirations
Increased expectations of healthcare
But not necessarily the money to pay for them
Shrinking workforce relative to the numbers
who need to be looked after
Changing patterns of volunteering
The Choice Agenda
“No decision about me without me”
Palliative care for all who need it
When they need it
Where they want it
How they want it
The choice of death
Physician-assisted suicide/euthanasia?
How do Hospice and
Palliative Care respond to
these societal changes
and pressures?
Taking the Palliative Care
Vision into the future…
Means bringing
physical,
psychological,
social
and
spiritual care
to all dying people who need it
This can only happen if Palliative Care becomes an
integral strand of healthcare and gains stable
funding
The Hospice Vision is about
transforming healthcare
If this is to happen we must:
Influence the generalists
Share our knowledge and facilities
Open up our care:
Increase the number of people we care for
Improve access across disease labels
Maintain quality
Contain costs
Currently Hospice Care receives
huge public support - Why?
It is there for people and their social
networks at the most emotionally
traumatic life transition
It is widely perceived to do what it
promises – giving of mind and heart
It makes other bits of the health and
social care systems work in the way they
are supposed to
Strong public support means that
government support can continue to be
niggardly (‘Big Society’ in action?)
The Dilemma for a Palliative
Care service
Investment in a social worker is
likely to result in enhanced quality of
care for current patients but not
much increase in patient numbers
Investment in another nurse may
increase access to more patients but
not quality of care for current
patients
(Tebbitt, 2006)
Is our Choice:
Icebergs of Excellence
versus
A Sea of Mediocrity
?
“Mainstreaming excellence”
(Going back in again)
Better care for the dying should
become a touchstone for success in
modernising the NHS.
This is one of the really big issues —
we must make it happen
Nigel Crisp (NHS Chief Executive), 2008
Taking the vision into the
future…
How do we “mainstream excellence”?
To provide UK hospice deaths to NICE
standards for all who want them would entail
a transfer of £1,300m from hospitals
The risk is a reduction to a symptom
control service focused only on the
patient’s obvious physical needs
A little for a lot
(Randall and Downie, 2006)
Can we maintain a balance?
Rather more for rather more
Palliative Care In-Patient Units
(Hospices?)?
Access to specialist palliative care beds is
needed
Not necessarily many:
 In 1991 St Christopher’s used 62 beds to support a
home care case load of 85 patients
 In 2011 St Christopher’s has 48 beds for a home care
case load of 850 patients
But they produce better outcomes than a consult
service alone (Casarett et al., 2011)
They ought to deal with complexity
 How do you maintain the staff to do that if your unit is
very small?
UK Department of Health
End of Life Care Strategy
Palliative care now has a prominence
it has never had before
“How we care for the dying is an
indicator of how we care for all
sick and vulnerable people. It is a
measure of society as a whole and
a litmus test for health and social
care services”
End of Life Care Strategy 2008
Making Palliative Care an integral
strand of healthcare
(According to the UK End of Life Care
Strategy)
The key is a whole systems approach
Dying well in the bed you’re in
(Actually, not having a bad death – 56%
of NHS hospital complaints relate to end
of life care)
Hospices are called to contribute their
expertise to this effort
But the emphasis is on generalists
Whole systems approach - 1
Identify people approaching the
end of life
Raise community awareness of death
and dying (an opportunity for
hospices)
Start discussion about end of life
care preferences
Not just those dying of cancer
Advance Care Planning
Note preferences and review over time
Whole systems approach - 2
Coordination of care
Locality-wide End of Life register (not
restricted to cancer) to facilitate priority
care
Care plans available to out of hours and
emergency services
Palliative care crises do not just happen
in hours
There must be specialist access 24/7,
backed up by out of hours generic services
Whole systems approach - 3
Make high quality services
available everywhere
Not just for cancer
Improve the skills of staff who
provide generic palliative care
Regulatory and higher education
bodies need to be involved
Whole systems approach - 4
Appropriate management of the last
days of life
Wherever they occur
Not just for cancer – care based on need
not illness
Involves 24/7 access to skilled nursing,
medical and personal care
Support of carers
Before the patient’s death and into
bereavement
What is Missing?
Actually making it happen
Quality
What is practically measurable?
What is worth measuring?
An equitable funding mechanism
When government currently pays barely 50% of
total Palliative Care costs
There is no extra money
The Australian AN-SNAP system is one approach
 Paying by case-mix
Challenges for Hospices
Contributing imaginatively to the
healthcare community as a whole
Performing to a standard
A properly constituted multiprofessional team
24h service availability
Demonstrating their outcomes
The non-malignancy agenda
Being efficient and providing value for
money
Why do some hospices spend 90% of their
income on their service and others only 50%?
So what is St Christopher’s
doing?
 Extending our reach
 Making generalists the centre of our education
 Training care home staff and introducing end of life
registers
 New initiatives in public education
 Finding ways of looking after more people within our
budget and while maintaining quality
 Expanding our clinics
 Medical and nursing consultancies
 Staying viable
 Living within our means
 Getting better at raising money
 Looking for opportunities to merge
 Containing costs
 Increased bargaining power
Education for Generalists
Making partnerships with the NHS
Advanced Nursing Practice for Palliative Care
(Masters level)
Foundations Course in Palliative Care nursing
Innovative action learning programme for
senior hospital nurses
End of Life Care for Social Services Care
Managers
Educational project with Mental Health
Services involved with Dementia
Over 4,700 participants on 180 courses in 2010
Education for Generalists
Enhancing skills in care homes
Advance Care Planning
The first syndicated training centre for the
Gold Standards Framework
Over 120 care homes accredited to date
Deaths in care homes associated with the
programme have increased by 20%
 Care Homes have 3 times as many beds as the
NHS but only 16% of deaths occur there
Public Education
Aiming to create healthier attitudes
towards death and dying
Schools project
Work with the BRIT School
(Performing Arts and Technology
College)
Drama
Video
Open Fridays
Concerts
The Schools Project
Children from Grade 5
upwards meet, work
and talk with Hospice
patients
•38 schools have taken part
in the UK and internationally
BRIT School students performing Hospice
patients’ stories for the EAPC in Vienna
Hospice as Performance Venue
•Sunday lunch
•Christmas day
•Live music
•Community choir
Faces of St Christopher’s
But Specialist Education Continues
too
 Joint multiprofessional
Masters in Palliative
Care joint with King’s
College, London
 Accredited Masters
courses in adult and
childhood bereavement
 Multiprofessional weeks
 Management course for
trainees and new
consultants in Palliative
Medicine
 Interventional Pain
Techniques in Palliative
Care
100 courses a year
2500 participants from 39 countries
The Anniversary Centre
Opening up our Day Centre activities
More
More
More
More
choice of therapies and activities
flexibility what you do and when
chances to socialise
opportunity to get information
More scope to see patients and families
at the Hospice
Better use of our Home Care nurses’ time
Opportunities to join in Day Centre
activities
The Anniversary Centre
 Large open social space for all users – Inpatients, outpatients,
bereaved, visitors
 Open - seven days 8am – 9pm
 Planned day care – five days 8am – 6pm
 Drop-in anytime – depending on capability
 Access to full range of clinics and therapies
 Access to group work programme
 Café area –food cooked on the premises
 Areas for relaxation and spiritual
contemplation
 Hairdressing salon
 Bathing
 Waiting area
 Garden
The Rehabilitation
Gym
Circuit Training
Fatigue and
Breathlessness
Group
Use of Physiotherapy
has doubled
Activities that reveal a life story
and leave a legacy
SONGS
As I journey through life, often times taking it
for granted
Not realising how precious it is
Tumbling in trial and tribulations it presents
And not taking the time to let a breath of fresh
air to touch one’s lips
STORIES
And I’m back in the pub where I
worked in the 60s when the Beatles
were huge. The pub is packed. Full up
with people having a good time. They
are all drinking, singing and laughing
and smoking. They are all smoking.
And it is the smoking that makes me
realise where I am now. I am not in
the past. I am here. Now. In the
present. Typical. I don’t smoke a
cigarette for my entire life. But this is
what has me now. Cancer. But that’s
life eh? Unpredictable.
.
There are times when I have been in pain and
despair
Only to wake the next morning
To know a miracle has happened
And I live another day
To be touched by the smiling sun
Oh how magnificent the gift of life…
POETRY
…I am old and wrinkly
I wonder if I could have had
kids.
I hear voices of an owl.
I want another life.
I am old and wrinkly.
I pretend to be in heaven.
I feel cold inside.
I touch the fur of my cat
I worry about the time I die.
I cry when things die
I am old and wrinkly.
I understand that people have
to die sometimes.
I say that I care for animals
I dream that I will get to do
different things
I try to keep my cat healthy
I hope my plants will grow
I am old and wrinkly
I want to thank everyone who
helps me
I am old and wrinkly…
An Anniversary Centre partnership with
the London College of Fashion
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Group of women talking
Low self-esteem, body image
No way out
‘never look or feel good again’
Listening to potential
What is possible?
Four week project
Celebration event
DVD
‘… you come to us when you’re able,
we come to you when you’re not…’
A bit less of this…
And more of this…
But also the
possibility of
this…
Or this
…or this
While you are at the
Hospice
Research
Some recent partnerships:
With the Maudsley Hospital
The prevalence and determinants of
depression in people receiving Palliative Care
The effect of basic Cognitive Behaviour
Therapy training on hospice nurses’ ability to
help anxiety and depression
With Southampton University
Developing user feedback measures (SKIPP
and VOICES-SCH) tailored to Palliative Care
 Overcoming the problem of response shift
The Reach of Palliative Care
 Palliative Care should reach all dying people and
those close to them
 So that they have access to appropriate care and
support
 when they need it
 wherever they need it
 whoever they are
 Hospices’ independence and single focus allow them
to innovate and to demonstrate standards
 But only the incorporation of a Palliative Care
approach into all areas of healthcare where dying
people are to be found will achieve this vision
“ You matter because you are
you, and you matter until the
end of your life ”
Cicely Saunders
Thank you for
Listening